WE NEED YOUR EXPERIENCES: Please check this list ... - LUPUS UK

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WE NEED YOUR EXPERIENCES: Please check this list of neurological/mental health symptoms in lupus and let us know if anything is missing

Paul_Howard profile image

Hi everyone,

If you've been following the forum over the past few months, you'll know that Melanie Sloan is leading a LUPUS UK-funded research project examining the neurological and mental health symptoms experienced by people with lupus (and related diseases).

Below is a list of symptoms that are currently in the survey. We need you to let us know if there are any neurological or mental health symptoms that you've ever experienced since having lupus (or a related disease) which are not included. We are interested in any symptom, regardless of how unusual they seem! You can be assured of no judgement from the research team who largely live with lupus or a rheumatic autoimmune disease themselves.

This is a rare opportunity to research the symptoms that are most important to you!

If you have any suggested additions to the list, please comment below, send a private message to MelanieSloan, or email her at mas229@medschl.cam.ac.uk

* Very low mood/ depression

* Anxiety

* Mania/euphoria

* OCD/ obsessive thoughts and behaviours

* Uncontrollable emotions/behaviour (anger, crying, laughter)

* Hallucinations

* Delusions and/or paranoia

* Loss of inhibition/filter

* Claustrophobia

* Agoraphobia

* Social anxiety

* Body image distress

* Suicidal thoughts

* Weakness/loss of strength

* -ve sensory symptoms (numbness)

* +ve sensory (tingling, pins and needles)

* Bowel/bladder dysfunction

* Visual problems

* Hearing problems

* Loss of coordination/balance

* Tinnitus

* Dizziness/fainting on standing

* Hypersensitivity to noises/light

* Fatigue

* Severe headache

* Overall cognitive problems (brain fog)

* Memory problems

* Attention/ distractibility

* Organising/getting started

* Word-finding difficulties

* Insomnia

* Hypersomnia

* Disrupted dreaming sleep

* Seizures

* Tremors

* Temperature sensitivity

* Feelings of unreality/spaced out

109 Replies

Sorry if it comes under one already listed but agitation or muscle cramps

Thanks Spanielmadlady, agitation as in mentally or physical agitation? Or both?

For me when my chest starts to deteriorate I get a restless agitation ( non agressive) as in I can't settle /can't sit still

Yes, more like from a physiological cause it sounds like? Horrible feeling not being to settle.

I also can't distract myself and end up trying to do jobs until I crash.part of it I think is knowing what's coming .I can suffer restless legs too worse at night and when my b12 injection is due.x

I can only think to call it (non aggressive) restless agitation 🤷‍♀️

Tachycardia/ palpitations

Would restless legs count as a neurological problem?

I have quite a few of those on the list but my rheumatologist thinks it’s ‘panic disorder’ which I disagree with as I’ve never had a panic attack in my life, he’s been very dismissive of my symptoms since he’s at a loss to help me because I’m super intolerant to so many drugs so I also wonder if drug intolerance is a neurological disorder, I also have multiple white matter brain lesions.

Yes I think restless legs could count as neurological. There is an 'official' classification for restless legs at night. Is yours worse at night?

Our previous research shows lots of people given misdiagnosis of anxiety/panic etc when it was then found to be disease symptoms. Hopefully this research will be further evidence and help inform/raise awareness amongst the clinicians as they often have very different views from both the patients and between each other.

There is some recent research showing lupus patients can be more intolerant to drugs than other disease groups, doesn't specify whether it's neurologically intolerant but could certainly be.

Thanks for sharing this

Thank you so much for replying Melanie, that’s really interesting about the misdiagnosis of panic/anxiety, I’ll be really interested to know what comes from the study as I find what I call ‘my head symptoms’ spaced out/drugged/ hung over feeling along with the fatigue the most debilitating and do feel as though I’m not taken seriously, I find it very difficult trying to explain it to Drs without them thinking I’m clinically depressed which I am not. My rheumatologist thinks the white matter brain lesions are causing my neurotransmitters to misfire possibly causing my symptoms and that SSRI’s might improve it, I wasn’t able to tolerate them a few years ago so I haven’t tried again but I’m thinking about giving them another go, I’m fed up with trying drugs and getting nowhere because of my intolerances I often end up feeling worse. I was able to tolerate Azathioprine 4 years ago but my rheumatologist won’t put me back on them because I don’t have ‘active’ disease showing up in blood tests ( no raised inflammatory markers) but apart from slightly raised ESR I’ve never have had, he prescribed it based on my symptoms but now says he can’t justify it.It’s a battle!

Yes my restless legs are always at night, occasionally it’ll start in the evening but usually it’ll wake me just as I’ve fallen asleep.

Please feel free to message me if I can help with anything regarding your study.

Sorry this is long!

Diane🌸

Hi Diane,I have white matter lesions too. For many years I went through the - "the white matter lesions are nothing to worry about - its age " or - "it's anxiety" roundabout until I changed Rheumatologist and Neurologist.

I was sero negative myself - with a many previous years of very positive lupus markers - but I knew I was going down hill neurologically.

It was a very difficult fight - one obnoxious young Doctor - saying " I was too stupid to understand my own symptoms "

The new Rheumy / Neuro combo ordered the sort of MRIs they usually give MS patients - with De - myelenisation protocols with a more sensitive MRI machine. This showed the damage with more detail. I also had a lumber puncture that showed quite a high number of active lupus cells along with oligocloncal bands which for me - indicated active cerebral lupus despite being sero negative.

I was treated with Prednisolone and Myfortic ( easy on the gut myco )

I hate the medications - but I'm able to take the bulk of them at night - which helps with sensitivity.

I recently went off the meds for an operation - and was surprised how much better I felt when I went back on them. Without them my mood and cognition took a dip as well as feeling run down an generally hung over and foggy.

I hope you can find some answers for yourself.

X

Hi Freckle, thank you 🙏 it’s good to know I’m not alone but pleased to hear you got the help you needed eventually despite the battle. Trying to get a dr to hear you and understand is so difficult! How awful to told you’re stupid, goodness you must’ve been so upset, I think I would’ve reported them!

I have ‘off the scale’ positive ANA anti centromere pattern and positive Anti Ro, but not dsDNA.

You say you are sero negative but had many years of +ve lupus markers, was that not enough for them to investigate further?

I’ve been given many diagnoses, at the moment it’s MCTD but I don’t believe this is correct, I need to challenge my rheumy on this, I think by what he’s indicating he’ll discharge me at my next appointment.

I have a F2F appointment in December and if I’m not happy I’m going to try and find another one.

I take all my drugs at night too, I have to avoid any in the day especially the morning otherwise I’m just a zombie all day struggling to stay awake which on top of fatigue is really really hard.

Out of interest I don’t suppose you’re anywhere in Sussex are you, just wondering who your good Rheumy and Neuro are?

Diane x

Just to let you know dianne, freckle is in Australia. I know her well. Thanx so much for telling me about this as its such an interesting read. Such important research that Melanie and her team are doing.

Don't these consultants need educating about our symptoms to stop them jumping to mental health conclusions too quickly. Im just sorry lovely how much your suffering without proper help.

Have a relaxing weekend and see you in the week. Xx🤞💐❤🌷🙏🌺🤞

Ah well I thought it might be a long shot Helen, what a shame 😞 I wish consultant’s had more time, understanding and actual knowledge about how it is for us on a daily basis, some just don’t get it, you said all along how annoying it was for me to be told I might have panic disorder didn’t you, it’s interesting and reassuring to know I’m not alone with these neuro symptoms, I just need to get lucky with a consultant who ‘gets it’ rather than fobs me off!

Hope you’re having a decent weekend lovely.

Chat soon

🌸🥰xxx

Hello lovely dianne, i would find it insulting if a rheumy consultant diagnosed me with panic disorder and Id be straight out the door!.

I so agree with you that rheumy's need to understand better what our lives are like on a daily basis. This is why the research that Melanie Sloan and her team at Cambridge are doing is so vital to tell these doctors where there going wrong. I feel very proud to have contributed to this work. Attitudes to us as patients really do need to change.

I also think rheumy dept's have tightened up the criteria for DMARDS and Biologics because of covid and you've been unlucky to hit this.

Consultants who understsnd these complex illnesses and what we go thru as patients do exist but its finding them and hoping that we have them in our local hospital clinics. Also its finding doctors who are more willing to treat the symptoms rather than having blood results back up which leaves us suffering so much. I was lucky at the begining of my illness i had such a consultant , an immunologist who wasnt fazed by it at all and he turned my life around. I do hope you find one similar dianne to improve your quality of life. It proves they exist. This rheumy you have needs ditching ,he really does.

Thank you so much lovely for your good wishes for monday. Really appreciate it. Im just so relieved its happening as im having a very painful weekend.

Good that your resting your hip. 🤞 its a good result for you. See you for 'cutie pics' on tuesday. No rush as ever to reply. Keep safe. Xx🌺🤞❤

😘🥰💕🍀🌸💕xxx

Freckle1000 profile image
Freckle1000 in reply to misty14

👋 Hi Misty !!!💜

xox

misty14 profile image
misty14 in reply to Freckle1000

Hello lovely freckle. How are you?. Sorry you've had an op but i hope recovery is going well. Xx👋💕🤞

Hi DuvetDaze,Sorry for the late reply - just recovering from a recent operation. Misty's right - I'm from Australia.

And YES ! You'd think having been diagnosed with SLE for most of my life would make it easier to get the neurological issues dealt with - but I was met with a lot of discrimination due to multiple somatisisation labels / - fibromyalgia and Dr assumptions about my psychological state.

In the end I just managed to find a new Rheumatologist who responded very quickly when I told her - point blank that I suspected I was suffering from neuro- psychiatric Lupus.

I'd jumped through about three Rheumatologists at that point.

Sadly- as my neuro state deteriorated I became more prone to Dr Bullying - due to a drop in communication skills.

Fortunately ( or unfortunatey ) I'd become used to this and just ploughed on.

Don't give up your - ploughing on !!!

X

No problem Freckle, I’m sorry to hear you’ve had surgery, I had surgery 4 months ago too, it’s not easy when you’re coping with other health issues. I wish you a good recovery and hope all goes well for you🤞. Yes Misty told me you are in Australia, it was a long shot but worth a try hoping you might’ve been somewhere near me!

Yes I’ve supposedly got fibromyalgia too but the neuro symptoms are horrible to live with , I’ve asked my husband to come in with me at my next appointment because I’m sure my rheumy takes me more seriously when he’s in the room as opposed to being on the phone or with just me in the room and I’m going to ask him for another brain scan! It’s not until December though 😢 so yes plough on.

Take care and look after yourself and thanks for replying to me, it really helps knowing I’m not alone with these symptoms 🙏

Big healing hugs 🤗 💕🦋🌻💕😘xxx

Thanks DuvetDaze,I'm recovering well.

You're right - having someone with you at the appointment does settle a lot of bad behavior from Doctors.

I've seen the difference its made with my own appointments.

Just recently I took to going it alone with Doctors again - and it's amazing how quickly things went down hill with some of them.

Good Luck with it all.

X

That’s interesting 🤨 I’m definitely taking my husband in with me👍 watch this space 🤔

Take care Freckle 💕🌻🦋xx

I also experience the hung over/drugged up issue. To the point, I've been accused of being a drug addict. Always thought it was part and parcel of the fatigue. Mentioned it prior to diagnosis a few times but was repeatedly ignored/skipped over. It is horrible and I'm unable to do anything when it does happens. Recently, I now get left side weakness. Noted by the hospital and a&e but never mentioned within the clinic letter!

I also have white matter lesions.

Thought about mentioning it to my new Rheumatologist but the thought of getting ignored again, don't think I would - emotionally - be able to handle it!

Hi Amakura, Oh goodness it’s so horrible isn’t it, I find it so debilitating when it’s at it’s worst, I get left sided weakness and a left blurry eye with it and pounding heart, it’s so depressing thinking of never being heard by the medical professionals and always being labelled as ‘depressed’ ‘ anxious’ or in a panic! I’m not depressed, I’ve never had a panic attack in my life, I do have some anxiety but it’s not surprising when life isn’t as I once knew it and the constant struggle of coping with symptoms😞 I’m sure there’s more to it and we shouldn’t be fobbed off and ignored!

I went to A&E with it five years ago thinking I was having a stroke but there was no evidence on a CT scan, they said it must be associated with migraines, I still feel this way and if anything it’s got worse in the last couple of years.

I hope you get some help with it all one day,

Diane x

Again, mine presents with migrains and palpitations. The migraines, which are very severe with photophobia, start first and everything then follows - needle like sporadic chest pains, muscle weakness, joint pain/stiffness, feeling cold, agitation etc. They're now saying due to the migraines (because the one time during an episode, I was on my period, it's not only anxiety but perimenopause despite my Gynaecologist objecting otherwise.

Agree re the anxiety.

We sound very similar, I’ve had bad migraines since my late 30’s then everything else followed, I was diagnosed with UCTD in 2002, the migraines have been better this year but all the other head symptoms are worse and I still get these weird episodes where something is happening in my brain, it’s so hard to explain it, it’s reassuring to know from this study and everyone’s contributions on here that we’re not alone, now we just need more consultants to get with the programme and to help us without making us feel as though we’re mad! Xx

Migraine, including Hemiplegic migraine.

Difficulty talking when tired,

Some days, difficulty picking up feet and arms - harder moving (hard work getting around supermarket).

Sudden food cravings, including salt.

Sudden thirst.

First thing in the morning, Internal tremble feeling, shakiness (may not be visible but feel unsettled)

Worsened temperature regulation.

Tingly, or odd feeling in muscles all over on waking.

Sweats out of nowhere - maybe related to doing something else.

These may have come under others already mentioned, but these are some of my symptoms:Feeling that my legs are vibrating, felt in my calf muscles, especially at night.Sometimes feel completely 'overwhelmed' and stressed over nothing, like I can't cope

A tingly, tickly sensation in the end of certain nerves, felt at skin level

MelanieSloan profile image
MelanieSloan in reply to Choccy8

That vibrating and tingly sensation, would you put it under 'positive sensory symptoms - pins and needles' type in the list? Does it come before/during flares?

My theory (and I may be wrong - will ask the neurologists at the study meeting tomorrow and feedback) is that the 'stressed' feeling is often because so many of us with lupus have dysfunctional autoimmune nervous systems so the calm down mechanism that automatically switches on in people without that problem isn't working properly in many lupus patients.

Obviously stress feeling can be from trying to cope with difficult disease etc but I think you're describing more a kind of physical stress as SpanielMadLady is too? Where it's that agitation, can't calm it down feeling?

I think this could be an important symptom to add but not sure how to phrase as we all have different ways of describing how it feels. Does anyone else get this please? Any descriptions that could cover it for everyone?

Hi Melanie, Yes I sometimes feel stressed/agitated for no obvious reason - a feeling of impending doom. Interesting that others suffer it too. I agree with your theory of why we get this ‘stressed’ feeling. It sounds logical.

Thank you, yes it's trying to get the wording right. We met yesterday with the doctors and they agreed they'd had patients describing this agitation/restless feelings and none of us could think of a better description so we're going for SpanielMadLadys restless/agitation description as thought that describes it well!

Good choice. 👍🏻

Choccy8 profile image
Choccy8 in reply to MelanieSloan

Hi Melanie. Thanks for your reply. The vibrating leg feeling does seem to be associated with flares, happening during periods of increased symptoms. I've also noticed it will appear again after steroid reductions. I guess it could be described as a positive sensory experience, though it's definitely different from pins and needles.

The stressed feeling seems to be unrelated to real-life events and, as you say, there's a sense of being unable to calm down. I've been taking N Acetyl Cysteine to help with lupus and found the stressed feeling was particularly bad one day I forgot to take it. I also find steroids will help with this.

Inability to count or do any thing involving numeracy including shopping and banking. It’s more than fatigue - more specific to numbers. I literally can’t understand or make any sense of numbers or symbols when flaring. Also repeating myself over and over unaware until someone tells me. I guess this comes under cognitive and unfiltered though?

Thanks OldTed60, yes I think sadly common and would come under cognitive. The unfiltered would be less forgetful/repeating but more saying things without thinking they might be tactless and maybe offensive (so being really blunt).

Ta for explaining. Unfiltered I am especially when on ‘roids. Have to avoid human contact often these days inc support groups. I tick most of your list but a lot is stuff that wasn’t picked up on at school for my gen ie what would now likely be called neuro diverse, dyslexic, dyspraxic, Asperger, ADHD etc

Maths was never my strong point but numbers...jeez no hope if I have to work out numbers.i couldn't remember my phone number yesterday at the garage and got all flustered when I couldn't find it in my phone which made it worse.i repeat myself too and forget who I told what too . X

Yeah I know as I said just now to MelanieS I never realised these could be part of autoimmune neuro. Just assumed they were things I’ve always struggled badly with magnified by meds and flares. Kids these days get labels and extra time for tests and exams but my day I was just lazy or “scatter brained” or too blunt inappropriate or brazen kind of thing! Always had autoimmune though so maybe all part of the same rainbow thing?

I can identify with being called lazy especially in sport but I was always very fatigued by it.when you see that list its a wonder any of us are still standing ! Have a good day xx

Lol I don’t stand a lot these days tbh and was always sneaking naps at school behind my book or blotter😂 sports days and athletics gym netball left feet how i dreaded them. On serious note though I worry with lists like this that stuff I need to work on myself or other stuff people say or do happens to some of us and people use neuro lupus etc as excuse to shout and bully.

On webinar yest and woman said video support groups wonderful but not been for me? Like school days there’s always one who takes charge and group comes clique. Then I get told off by them for repeating or waffle bit so then I leave after turn unfiltered back in reply . Maybe need to get assessed for neuro diverse one day although too late to do much bout it now even if knew how!

Or maybe copy and paste list and just sit there holding it up and pointing before open my little old mouth?!

I hated sports day too.webinars etc arnt for me either I'm not into cliques and sometimes tech overwhelmes me especially if it doesn't do what I want it too ...even if its wrong 🤭 I do like your idea of holding up list and pointing .. a flashing arrow would be good for muscle fatigue days when you haven't the energy to hold anything up xx

So glad not just me 😘. Or we could just have large flash up emojis?!🤦🏼‍♀️🥴🤷‍♀️🫣🤯🥺🤔🫠🫡🫥😂

I'm only 43 and I actually tell people now that I have these problems (memory, number, name etc) as it saves my embarrassment. I told the school receptionist the other day as I kept forgetting my 2 kids things like their hats or packed lunch and had to take them into school 10 mins later after I got home and realised, I thought I'm fed up of looking an idiot I'll just tell them! Cos she got to the point of not needing to ask their names she already started writing 'lily' on her piece of paper....😂😂 Now I don't need to worry about it they don't just think I'm a useless parent I'm a diagnosed useless parent!! 😂

Paprika60 profile image
Paprika60 in reply to OldTed60

It is like a brain fog, removed from myself with a barrier in-between. Sometimes I feel very clear and focused and other times, I am here with myself completely. It is a dull sense of being.

Vivid dreamsMental pausing - try to do things but you just get stuck like you are in pause

Word swapping - want to say a word but say a different one with same start sound. There is a posh term for it.

Melba1 profile image
Melba1 in reply to Hamptons

Oh yes Hamptons, those ones definitely seem common

Spotty-ewe profile image
Spotty-ewe in reply to Hamptons

I’m the same. It’s called a Malapropism after the character Mrs Malaprop in the play “The Rivals”! I actually listened for a change when we studied that play in school! 🤣

Labyrinthitis, I had this multiple times and it wasn’t cause by ear infections. Not sure if it’s neurological. My mother in law also has it and she has RA.Cold skin from feet to face (although this is more a physical symptom right ?)

OldTed60 profile image
OldTed60 in reply to EG74

I get this too. Had after 5th Covid vaccine 5 but didn’t seem to be ear related - more neuro?

LottieLou96 profile image
LottieLou96 in reply to OldTed60

If it's not caused by ear infections but similar to labyrinthitis are you thinking like vestibular neuritis?

OldTed60 profile image
OldTed60 in reply to LottieLou96

Yes I have wondered about this. And I had Nystagmus at the time so an ENT referred me for vestibular balance checks some years ago. However by that time the labyrinthitis had resolved and they were fine so none the wiser. I’m seeing an ENT again first time since then later today about dysphagia and loss of gag reflex so will try and ask about this as well. I do have constant tinnitus and was told this was white matter, neuropathy and high frequency bilateral hearing loss - so I’m sure some of the episodes of labyrinthitis are neuro CTD related rather than vestibular. Mind you during recent hospital stay on a neuro ward was repeatedly told my ears are tiny when they stuck thermometers in (ouch!) so maybe some just structural?

LottieLou96 profile image
LottieLou96 in reply to OldTed60

Just wondered tis all.

Because one is the ear and one is the nerve that is inflamed.

I get recurrent ear infections and find my ears inflame which can make my hearing go muffled.

Alot could be neuro CTD, I'm stuck with tinnitus, and honestly it's so annoying.

Sorry to hear your going through ENT for dysphagia, again, could all be AI disease, CTD, it's crazy how many symptoms and issues we get from lupus.

Hopefully the ENT has some answers for you x

OldTed60 profile image
OldTed60 in reply to LottieLou96

Well the ENT was definitely wanting to scoot off for his weekend asap - I only got 5 mins max! He shoved a camera up my nostril down into my throat with no preamble and showed me the photo of reflux and swollen epiglottis, blamed “visible silent reflux” on my scleroderma and Sjogrens and said keep taking max of all my meds and nothing to worry about ie no obstructions. I’m on every possible drug for reflux at max dose already so he shrugged and said “at least it’s just CTD nothing serious”. I tried to ask about glossophyangreal neuralgia or nutcracker oesophageus but he was waving me out the door saying “all silent reflux my dear!”.

There was no chance to mention the labyrinthitis or ask about tinnitus as he needed to write up my notes before catching his plane - but I honestly think he would have just blamed silent reflux for that too! 🙄😂

LottieLou96 profile image
LottieLou96 in reply to OldTed60

Aww, sounds absolutely awful!

I can't believe people are like that tbh. I really can't. Saddens me to hear you were dismissed like that.

It's like they lost their desire to help others a long time ago.

OldTed60 profile image
OldTed60 in reply to LottieLou96

Yes I know - what a guy. I’ve noticed that these kind of doctors/ surgeons don’t like neuro symptoms much or rare autoimmune diseases. Mind you nor do I!? X

LottieLou96 profile image
LottieLou96 in reply to OldTed60

True, it's all mental that they make us feel mental.

But yeah, my neuro won't deal with any of my neuro symps, and neither rheumi or neuro think the need to actually do a neuro exam. So odd, I give so many neuro exams every single day and I'm like you may wanna see my deficits lol.

OldTed60 profile image
OldTed60 in reply to LottieLou96

Funny thing with me is that for years and years most of my issues have been blamed on either psychological or neurological stuff eg vagus nerve damage, white matter - with me saying um don’t think so? Psych say I’m dead grounded. Neuro now agrees most is likely my scleroderma and stuff like prolapses, dental wear and tear. Lately diagnosed with lichen sclerosus which has caused my provoked vulvodynia. Makes me fed up that so much gets blamed on neuro just cos of Sjogrens/ lupus/ Vasculitis/ MCTD. Other way round for me where they assume neuro rather than double checking. I’m very firm now with my rheumo about what they put on my diagnoses list!

LottieLou96 profile image
LottieLou96 in reply to OldTed60

Yeah everything ends up so confusing.

I get seizures in part from the lupus damage on the brain, and in part brain injury from domestic stuff, and a strange unknown third lesion. Even with an MRI and EEG indicating seizure activity and damage from lupus they love to tell me its anxiety. Sent me to a neuropsychiatrist that told my neurologist to treat me urgently for seizures, and she unwittingly is. But having uncontrolled symptoms is a nightmare, and in the end takes its toll mentally and physically. With the neuropathy and uncontrolled seizures honestly, its a blessing when people still need urgent attention they ask me to help and somehow I stitch and fix wounds and gain difficult IV access in the most unwell individuals.

But you are right. People for sure like to go down the psychological route, and also like to blame pain solely on neuropathy without even wondering if they could lower the cause of the pain, like AI inflammation and arthritis.

So its all about keeping an open mind and making sure these docs actually keep an open mind and think and re analyse things if they don't work.

OldTed60 profile image
OldTed60 in reply to LottieLou96

Aww. I wish I’d had you with me on neuro ward a few weeks ago. They kept looking for veins for the daily IViG and made such a hash. The young neuro started out saying never had CTD patient getting this and testing my reflexes which are fine always. I said it’s for gut dysmotility not large fibre neuropathy when she implied I was staying there on false pretences! By day 3 she’d completely changed tune and was being really sweet - maybe read ny notes more or seen I hadn’t eaten anything solid. .Gastroparesis is neuro gastro after all.

She was trying to insert the last cannula after blood bath from previous one breaking free and commented on how freezing my hands were. I laughed said that’s just my Raynaud’s flaring, thinking she needs to get a bowl of warm water to get into this vein. She looked at me eyes wide and said “wow - Raynaud’s in June??!” Bet you’d not have thought twice. X

LottieLou96 profile image
LottieLou96 in reply to OldTed60

Oh dear.

Depending where you are there are rules on trying with IV access. In Scotland, two is the limit we can try before we get a senior, and they aint happy when that happens, so our success is pure will power haha.

Raynauds in June :) Its still not really well known that its not just the cold that makes the raynauds flare. Seemingly anything and everything that affects the lupus affects it, doesnt it?! At least the temperate, too hot environment of hospital seems to help, reduces outside influence over time. I still have my hot water bottles one on each hand haha. I'm liking the new neck hot water bottles as well!

You're doing well to keep so positive for sure!

:)

EG74 profile image
EG74 in reply to LottieLou96

No because that is more aggressive I think. Mine the first time was really bad but later on no as bad attacks but still annoying. Many times it happens after I’m under stress. I just learnt to live with it and sleep like this ( with my head feeling like drunk haha 😂)

We think this one of my probs👍…started v early when I was a schoolgirl & gradually progressed to so constantly debilitating that I was off work for months, Now pred & myco keep it damped down so long as my condition is generally stable

MelanieSloan profile image
MelanieSloan in reply to EG74

Thanks, yes, the ear issues can be autoimmune inner ear disease or all sorts of causes, some neurological. Labyrinthitis is horrible isn't it? I've had and that constant feeling of vertigo and sickness is so unpleasant...

Cerebral Lupus and psychotic episodes.

Thanks for sharing awareness75, I hope the treatment got in under control and you have good clinicians

At the time, they hadn't experienced a patient who's mental state was so overactive. They came to decision to put me in an induced coma for two weeks, so that they could treat the physical issues of Lupus that was occurring. After that, the team was very good with the care and stabilising it all.

Oh goodness, sounds quite distressing. If you're happy to complete the survey when it comes out, would be very useful for others (doctors and patients) to hear your experiences and if you give permission and your email on the survey I can maybe interview you (everything is anonymised). thank you

Hi. Yes I will do that

Sorry, distracted, but…Have scanned your listing, but feeling muddled today so not sure is anyone has offered up:

- Formication, so -called delusional parasitosis: mine always flares alongside AID/CTD/PID flares

- GI dysmotility (mouth to anus) progressing to Gastroparesis + Chronic Intestinal Pseudo Obstruction (my rheumy actually documents CIPO in my records)

- Raynauds-related Ischemia reperfusion injury (due as much to progressive vascular debilitation as neuropathy)

- Erythromelalgia: related to the above RP stuff

- inflammatory process migraine (mine responds poss to the powerful NSAID I was originally prescribed for endometriosis) and mine have pretty much stopped since my neuropathy-related GI dysfunction finally became more adequately medicated)

- early onset chronic tinnitus+ vertigo etc which responded positively & consistently immediately I got on to long term daily 10mg pred + 1000 mg myco

- sensation in legs of : being twisted like a towel, while having cold water pouring down legs

ALL of this + my other early onset progressively debilitating neurocerebral type manifestations ( most everything you’ve all listed & mentioned above) have been promptly & consistently responding positively to the meds am prescribed for my AID/PID/CTD conditions …& they all flare when any of my conditions are flaring + when any of my meds are paused🤷🏼‍♀️

Will return if anything else surfaces ❤️🍀 Coco

Jolly formication is horrendous, so irritating for sure. X

😆👍🐜😝😘

Oh I had to check for a sec I didn't spell that wrong, if you get what I mean 😆😆

Yup: me too 🤣🤣🤣🤣…

my dermatologist loves to talk about this … she is a generalist, but her speciality is the psychological side of dermatology: psychodermatology

psychiatrictimes.com/view/p...

Tactile hallucination in essence.

🤩👏👏👏👏

Barnclown profile image
Barnclown in reply to Barnclown

PS susceptibility to SHINGLES: Chronic & ALSO Zoster Sine Herpete

Thanks Barnclown, yes definitely looking at response to medication and when these symptoms come and go too. Insect one sounds unpleasant; would you write that under 'hallucination' on the survey list?

🤷🏼‍♀️ Good question….will try to ask my dermatologist (who is also a psycho dermatology specialist) when I see her mid July

Thanks barnclown, a psycho dermatology specialist sounds a bit worrying when abbreviated! And a very niche role!

We had a hallucination talk yesterday from our lovely study psychiatrist who covered all sorts of different types of hallucination and this would count as one. He said one of the key points to ask is whether we think it's real or not at the time and how unpleasant/ pleasant it is as some people actually don't mind their hallucinations?

For sure:

psychiatrictimes.com/view/p...

I’d LOVE to talk to her about it. She has been so FANTASTICALLY helpful & FULL of specialist insight re my version of 🦓ness that I’m pretty sure she’d have interesting thoughts on it all

Takes all sorts…I’ve never enjoyed my hallucinations 🤷🏼‍♀️…they usually scare me a lot…& seem extremely real

Optic neuritis (MS definitely ruled out).

Severe herpes simplex virus infection in SLE can trigger meningoencephalitis and pancreatitis. I know as I’ve experienced both and been terrified. This has been evidenced in a paper by the BMJ. I am also formally diagnosed with complex PTSD and know when I flare , I am easily re traumatised. Also TIA . 7 in total. Vertigo and a rare form of migraine often present one after the other.

Thank-you, sorry you have complex PTSD, very difficult. We have two of the physician experts in encephalitis in our study team and they said some of the lupus patients neuro- symptoms and the amount is similar to their encephalitis patients.

It will be interesting to see how you separate the mental/phycological symptoms that are common to many other illnesses as well as just the result of getting older. Similarly, Lupies often have other illnesses e.g. RA and diabetes etc. that could be the cause of the symptoms listed, not necessarily Lupus. I have asked my wife to read through the list (she has had lupus now for nearly 2 years) and the following are her comments not listed in the post:Lack of stamina - needing to walk with the aid of a walking trolley, and needing to sit down, for a break, after a couple of hundred metres. This leads to ---

Lack of confidence and balance issues

Persistent and intermittent chest pain and abdominal pain --- unable to breath deeply without pain. NB -Xrays etc have revealed nothing unusual, hence, could it be neurological?

An odd type of numbness in soles of feet " feel like cardboard" -- yet they are still quite sensitive at the same time. Is this neuropathy?

Thanks for the research -- it all helps.

Thanks BeeManShrop, yes it's not always easy to separate out, but we doing two methods to help. We're going to compare the lupus patients frequency of these neuro-symptoms with 'healthy' friend surveys and also compare with rheumatoid arthritis frequencies as they will have a similar burden of chronic disease affecting their mental health but don't have the direct effects of their disease on the brain as people with lupus can have.

Please thank your wife for her comments too - all really helps in working this out

Described as having 'cerebral lupus' in 1970s, Hammersmith Hospital (having been diagnosed S.L.E. in Wales, 1976). History of lifelong severe headaches, transient ischaemic attacks with nominal dysphasia. Currently left-sided limb weakness, when tired, end of day. In past year or so, bilateral presentation of Ocular Migraine/'Kaleidoscope Vision'.

Thanks picinisco, sorry you've had this. Did lupus treatment help?

Hi Melanie, thanks for your question. When you say, "lupus treatment", I'm not sure what you may be thinking of? 'Treatment' all those years ago, basically involved attempts at 'trying' medications like azathioprine (liver function impaired within days!), cyclophosphamide (to treat concurrent diffuse glomerulonephritis ) and, always high-dose Prednisolone and a 1000mg 'pulse' Methylprednisolone whilst an in-patient at the Hammersmith Hospital. More recent hospitalisation (for Polymyositis, 2003, at Bath Hospital for Rheumatic Diseases) involved urgent high-dose steroids and Methotrexate. I am on long-term Hydroxychloroquine , 200mg daily. I am not on any 'biologic' Lupus treatment. Throughout 'all this', the T.I.As occur, out of the blue. About 3 years ago, I suddenly experienced left sided weakness and took my BP, 180/100!! Landed up at A&E and after hours distressing wait, told, "we think you've had a stroke" and my anti-hypertensives were increased. 4 days later, still presenting with left sided weakness, I was seen by a Consultant at 'Stroke Clinic'. In front of his students, he said, "You haven't had a stroke...just Lupus MIMICKING a stroke!"

In 1982, Prof. Graham Hughes presented me as a patient with Antiphospholipid Syndrome , at the Hammersmith's 'Heberden Round'. He stated my background of Migraines and Thrombocytopenia . 11 years later, I suffered miscarriage. Later, I was prescribed daily aspirin 75mg.

In 2020, I was late-presentation myocardial infarction with resulting heart-failure. My amount of medications increased dramatically, naturally to include anti-platelet medication. Currently, I am experience left-sided weakness. So, as you will see, no, my "lupus treatment" hasn't ever really helped! I am proud that I have survived a poor diagnosis of Lupus, in 1976, but lament a lifetime of severe headaches and symptoms as described - which have adversely affected every aspect of my life. I sincerely hope that, one day, very soon perhaps, other people with the distressing presentation that includes neurological presentation, especially the skull-clenching, migraine-type headaches may finally find some desired respite!

Has “feverishness” been mentioned together with a distressing facial red flush.

I get these some nights before my next dose of MMF.

I know it’s physical but my anxiety/insomnia increases when it happens.

Thanks Betty909090, do you mean feverishness as in your temperature is higher physically or part of that restlessness, agitation, can't settle type feeling described by others on here. We wouldn't add fevers in to this study as not likely to be neurological but if it's more of a feeling rather than raised temperature that could be something that's more related to the brain.

Thanks for responding.

Feverishness/high temperature or the sensation of a high temperature may be due to hypothalamus dysfunction, the part of the brain that regulates our temperature through homeostasis and physiological mechanisms related to temperature control despite fluctuations in the external environment.

One wonders whether with lupus the dysfunction may be due to our defective immune system destroying parts of the hypothalamus? Feeling of coldness can also occur? Anxiety/depression can relate to these malfunctioning hypothalamic brain mechanisms and/or regions?🧐

Ultimately these are neurological/brain initiated?

Autonomic symptoms and thermodysregulation maybe, unless it fits elsewhere.

Thanks so much for this study, really appreciate getting our views on these things and for tackling some of the more confusing neurological impact.

Thanks Lottie, yes we have autonomic dysfunction in another section but have restricted it to feeling dizzy/faint and/or raised heart/drop in blood pressure on standing for this symptom section. Which I know doesn't cover all the autonomic symptoms - hard to live with a dysfunctional autonomic system I know.

Yes definitely really important to get patient views -who knows better than the patients??

Yeah doesnt cover it all, but I know you have a hefty list already to collate. :)That was the first thing really for me, suddenly dysregulated and a shift in homeostasis. But its great your trying to put these things together, honestly!

Not any easy task either when is it the neuro damage, or the stress, or both that impact the neurological or psychological symptoms one experiences?

Thanks Lottie, great to discuss it here and get everyone's feedback and ideas to add into the study.

Yes, that's a huge part of the challenge, especially with the mental health symptoms like depression and anxiety. Who wouldn't be more likely to be depressed and anxious with a difficult and unpredictable disease like lupus? Changing our lives so much, our ability to be the people we would have been, to work, to parent etc as we'd have liked. Add in the difficult diagnostic journeys, the dismissal some people face.

And then the biological process acting directly on the brains/nervous system in some people with lupus just as it can on kidneys, skin etc.

Untangling which cause is always difficult (and often multiple changing causes in each person) but as you know in your role, so important as it effects treatment options and the likelihood of getting that symptom under control for each individual and living better lives.

I think we should definitely make some progress from past studies as they all used time of lupus diagnosis for measuring mental health/ neuro-symptoms and anything before diagnosis was counted as a pre-existing unrelated to the disease problem. Whereas we all know on here that time of actual diagnosis can be many years after the actual symptoms so we are not using diagnosis point, rather the start of lupus/UCTD symptoms from the patient's perspective. And very strangely (and wrongly) most previous studies didn't actually ask patients for their symptoms - it was the doctors meeting to discuss their views on what patients had, and again we know how little can be shared with the doctors so a huge number of symptoms not included. But with everyone's help we've got a much more comprehensive list to explore.

Thank you!

A deep sense of disappointment that will not go away. A sense of being cheated of life by life...yes, I experience many of these physical symptoms at different times but one constant feeling is this unfairness of being ill this much. I could have done so much more in my life if I had not had chronic fatigue issues...let alone lupus and etc. I try my best to be optimistic and see the bright sunny side of day. Otherwise it could turn into an anger and bitterness.

Thanks Paprika and very sorry you feel like this. Very hard disease to live with and hope you have much better days soon

I don't know if this falls under insomnia but I am constantly being woking up by pain in different body parts from laying in one spot, it occurs anywhere between 20 and 40 minutes causing disruptive non restorative sleep.

You could add sweats especially in the night - night sweats, can be severe

EG74 profile image
EG74 in reply to chrisj

I used to have night sweats before too.

Just thought of another that affected me badly last week during and after IViG and when my CTD first kicked off - “provoked allodynia” and “provoked vulvodynia” - also pudendal, trigeminal and glosophyangial neuralgia and ganglionopathy - cause numb side of face, swallowing issues and sensory ataxia

Eye problems, double vision, I think called convergence something or other where you see one thing on top of the other. Thought to be psychological, but then told "lazy eye" since a child.

More white lesions in my brain than is usual for my age.

Tinnitus, regular UTI s which take about three or four weeks to subside.

Loss of confidence with numbers, which is daft as my work involved accuracy with money.

I dial 1471 several times to make sure I have the number that called written down properly.

Weakness down my right side, including a numb foot that tingles like pins and needles.

A frozen right shoulder which has never regained its full use and the pain down my arm mimics carpel and ulna tunnel syndromes. Orthopaedic surgeons seem mystified.

Sleep apnoea and having to use a cpap mask, which I hate and take it off after several hours. I have a better sleep without it!

A feeling of doom but with no idea of where the danger/crisis/action/person/catastrophy is coming from.

A feeling of being cheated of having a normal life like my friends, and yes, some jealousy too.

The shock horror when a doctor told me my illnesses were psychosomatic. He didn't believe the blood tests, calling them marginal, they weren't, but what did he know.

Relief when blood, xrays, ct scans or urine results genuinely confirmed why I wasn't feeling well.

Urticaria/hives that appears and disappears at will for no reason.

The guilty feeling when my husband has to shower and dress me daily because of the spinal collapse from osteoporosis mostly caused by years of steroids.

Everyone remarks how happy and smiley I am, only my husband knows how much effort that takes.

The fatigue and trying to keep going as I don't want to be thought of as lazy.

When a specialist says "fibromyalgia" and looks suspiciously at me and then his colleagues, as he scribbles something.

Prior to my diagnosis of lupus, my gp prescribed different SSRIs for ten years before I changed doctor and had a referral to St Thomas' She said I was suffering anxiety and depression from having teenage children, then stress from organising my daughter's wedding and finally having "empty nest syndrome" as they left home. One SSRI made me feel suicidal, enough to look for where I was going to do it. I trusted this gp and now looking back wonder how I could have been so stupid.

Strangely I initially felt a lot better when I had a tangible diagnosis.

Re reading my list I think I suffer most from what other people think.

My self image, ego and morale have gradually worn me down over twenty years, I am a shell of the vibrant, intelligent, sporty, happy, busy, active person I was.

Thanks for the thorough response, but very sorry to read it and the difficult journey you've had. And yes a lot of our earlier work found a lot of people reporting the same thing - that relief on actually knowing what was wrong finally.

Hi, sorry if this is not what you’re looking for but how about rashes? I’ve had rashes that have prompted neurological investigation because there seems to be no other explanation. I’ve had hot hands/feet/knees, where they change colour to a bright red and radiate heat like they’re on fire. It’s not Raynaud’s and hydroxy seems to be keeping it at bay at present. Sometimes I would get tingling sensations with the heat, and sometimes it would pull the skin. There was no consistent trigger eg. temperature changes and my circulation is fine.

Also, I get sudden involuntary spasms in my hand where everything painfully locks and I drop what I’m holding or can’t continue with what I’m doing.

Hope this helps 😁

Thanks MusicalFurbaby, yes everything is helpful. We haven't included rashes in this one as usually more dermatology than neurology but like you say some may have a more neurology element. I think Barnclown may be able to help with your hot hands etc?

Thanks Melanie, as I say the hydroxy seems to be doing the trick right now. And yes, such rashes can be dermatological (my dermatologist did diagnose me with vasculitis) but for a while my docs were thinking neurology, which is why I thought it worth mentioning. All the best with your research project!

EG74 profile image
EG74 in reply to MusicalFurbaby

Erythromelalgia?

MusicalFurbaby profile image
MusicalFurbaby in reply to EG74

Thanks EG74, yes that was part of the differential diagnosis for a while, but we never really diagnosed it conclusively. In the end, I was put on hydroxy for vasculitis and other rashes, and it (thankfully) seemed to cure the hot hands at the same time!

So many replies, this may have been mentioned. Transposing letters and numbers on an intermittent basis. Almost like temporary dyslexia.

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